That little piece of GUILT.....A Husband's Rebuttal

I’ve remained purposefully quiet since our “Reality Check” back on October 21, 2010. On that day, Rebecca and I were squarely confronted with the reality of the seriousness of her condition. That day was the toughest day of my life. I felt as though my heart was crushed while being simultaneously kicked in the gut, to only then feel hollow and bewildered by what was now our new reality. It was a moment that lasted only a few seconds and was quickly replaced by concern, compassion and an overwhelming sense of worry as I looked over at my wife and saw absolute heartbreak in her eyes. I’ve never felt more powerless and sunk than I did at that moment. Sitting in those dreaded plastic doctor’s office chairs, I made a promise to myself -- from that day forward, I would be her strength and her sanctuary; that I would lead by example; that I would show her that we’re going to persevere and make the most out of whatever life throws at us; and that I would always care for her the best that I could.

That day marked the beginning of our new journey towards redefining our priorities, refocusing the lens on what’s most important, and recommitting ourselves to steadfastly loving one another, each and every moment.

In the time since, my sole focus has been honoring that promise and doing all I can to provide my wife with unconditional love, support and the life she deserves. Now more than ever, I try to keep my “husband radar” up and remain in-tune with her, her thoughts and her feelings. On the whole, I believe I’ve done a good job of this, but yesterday I was caught with a sharp hook that caused me to take a step back and reevaluate. As many of you may have already read, Rebecca recently posted a blog entry titled “That little piece of GUILT”. Upon reading it, I had no idea she was harboring these thoughts and feelings. We’ve certainly talked about them in the past, but I was unaware of the extent and continuity of the feeling. That eye opening experience has served as my “call-to-blog” and to break my silence.

With that said, here goes Hubby Blog entry 1: That little piece of GUILT…..A Husband’s Rebuttal

To my wife:

That little piece of GUILT………my quick rebuttal and overall feeling of guilt can best be summarized by swapping out “GUILT” and replacing with a well known, four letter slang term referring to pooh (and I don’t mean Winnie the Pooh) -- That little piece of SH*T -- that pretty much sums up how I feel and think about guilt. Guilt is the little monster that lives in the dark corners and shadows of our minds and emotions. It lurks there, feeding itself on things we beat ourselves up over and eventually growing to the point where it changes the way we would otherwise think, feel and act. Guilt is corrosive. It is the equivalent of rust. If left untreated, it will eat away at the surface and become pervasive; working deeper into the inner layers and eventually, compromise the integrity of the inner stability and workings of the structure. (NOTE: Please do not read this as I’m comparing you to a building or piece of machinery!). When swiftly addressed, guilt can be removed just like rust, buffed out and made new again….even better than new….with little effort. This is how we need to look at and deal with guilt.

The only positive arising from guilt is that it is sign that your moral compass continues to point true North; that you recognize fair from the unfair; that you are appreciative of those around you; and that you’re a person who wants to pitch in and do things for others. In know this is where your guilt comes from and I understand.

Permit me to now change directions and provide an alternate rendition. It’s short and to the point:

DEVOTION [dih-voh-shuhn]
Noun
1. Profound dedication
2. Feelings of ardent love
3. Love, loyalty, or enthusiasm for a person, activity, or cause
4. Ardent, often selfless affection and dedication, as to a person or principle

Anytime you feel that little monster of guilt lurking in the pit of your stomach, always remember:
1. I am profoundly dedicated to you
2. I have feelings of ardent love for you
3. I have love, loyalty, or enthusiasm for you
4. I will always remain ardent, with selfless affection and dedication to you

You are my everything and my reason for all that I do. This is unconditional and unwavering. I do things freely for you, just as you do for me. We are a team. We each contribute in similar and different ways. Have you ever seen a puzzle that is made up of all the same shaped pieces? No, of course not - and that’s why we work and make a perfect union.

I love you…today, tomorrow and all the days to come.

Your hubby,
Bob

That little piece of GUILT.

Anyone who has dealt with some form of chronicity in their life, should be able to relate to this post. Even more so if that chronicity refers to an illness or injury.  Over time, it gets OLD.  Yup, old in the sense of I am tired of dealing with all this crap, old.  Not only for the person who is directly effected, but for their loved ones, family, caregivers, friends...it affects them all, albeit in different ways.

One thing that I struggle with sometimes, is feeling guilty for what I bring to the table, (in terms of my health) to my relationships.  Yeah, I know I bring a lot more to the table than just some crappy lungs, but these crappy lungs cause a lot of "inconveniences" that I would prefer them not to.  For instance, travel.  Nowadays, traveling for me is just "tougher".  It takes me longer to get going because I seem to have longer and longer treatments.  I can't skip them like I used to, and feel okay afterwards. Then, I have all the equipment that I use on a daily basis;  nebulizer, nebulizer cups, medicine, meds that have to kept cold so therefore a cooler, syringes, and of course the almighty VEST, which probably weighs a good 20-30 lbs.  Then, throw in the fact that I am a lady, and of course, I can't pack light on clothes, shoes, jewelry...you get the point.  When going somewhere for more than an overnight's stay, I always bring everything, including the Vest.  So, flying...besides the fact that it takes me longer to get going, too have to haul all that crap to the airport...is quite frankly a pain in the @$$.  I am always stopped at security despite my efforts to explain the them what this machine is for.  Not once, has any TSA agent ever seen this masterpiece.  But the guilt comes in here.  When my husband travels with me, he takes on a lot of the burden of carrying the heavy stuff, getting our bags up/down our stairs, helping lug everything through the airport/planes, etc. I feel bad for that, he has his own stuff to carry, and now he has double...he didn't ask for that.  GUILT.

The scenarios are many in which I feel guilty, including the above.  When I am not feeling well and don't feel up to doing what my husband or family does...GUILT.  When I have to cancel dinner plans with my best friend who is in town for a night b/c I almost coughed out my lung... GUILT.  When I forego seeing a patient because he/she has pneumonia and could possibly infect me...GUILT.  The fact that my husband and parents sacrifice so much, to help me..GUILT.  The fact that I might not be able to be a mother to some wonderful children my husband always wanted, BIG GUILT.   The fact that I can't work full-time to help support our financial situation better, BIG GUILT.  And finally, the fact that my healthcare costs are through the roof combined with the fact that I can't work full time, HUGE GUILT.

I can't help but feel this guilt, despite knowing that all of you understand, and you don't take offense to it.  I can't help but lay awake at night sometimes, feeling sorry that I brought all of this "junk" to the best relationship I have ever had.  I suppose this is all part of the process of living with a chronic condition, but sometimes it just stinks. I am reassured daily by the love my husband shows me, from the time I wake up, until he finishes rubbing my back at night, that it is okay.  That he loves me for who I am and nothing gets in the way of that.  There aren't enough words that can describe the amount of gratitude I have for my husband. He deals with a lot of things most men at the age of 32, will never have to, and he deals with it so gracefully.  And, for my parents who continue to support me, listen to my problems and push me to explore life's challenges, thank you...thank you...thank you.

Guilt comes and goes, but the feeling of loves lasts forever.

Bringing a new meaning to "relating to the patient" ...

“The bond that links your true family is not one of blood, but of respect and joy in each other's life.”

In my nursing education and career, I heard so many phrases about "relating to your patient".  Learning how to relate to my patients, has never been a challenging task for me.  From the patients who require medication monitoring, to those with more involved care such as wound care or ventilator care, one thing I am "proud" to say is that I can certainly empathize with them.  For obvious reasons, I can relate to their feelings of desperation, fear, uncertainty and need for a comforting hug and a smile.  Today, started out a normal day, rushing to get out of the house and eager to see my patients.  That normalcy, took a turn while visiting my second patient of the day...

This particular patient has a bit of a complex medical situation, but the obvious is that she requires oxygen 24/7 due to a rare lung condition called Idiopathic Pulmonary Fibrosis.  While performing my assessment, I noticed a few tears rolling down her cheeks.  Surprised, I asked her what was wrong.  That was when our relationship went from "caregiver/patient" to more of a "patient/patient" relationship.  She explained to me that just yesterday, her pulmonary doctor, told her that she would likely need a lung transplant within the next two years.  It was at that moment, my heart sank and I had an overwhelming sense of sadness.  I reached out hugged her, oxygen tubes and all, and said "I understand".

Before I could even hesitate to think twice about telling her why I understood, the words came tumbling out.  "I too, have been told I will likely need a lung transplant".  Her expression was of pure shock, she did not quite know how to respond.  Sure, I "look" healthy on the outside, but what she doesn't know is that there is a storm brewing in my lungs, waiting to erupt.  So, our usual talk about her family, food and her well-being, turned to how she felt about a lung transplant.  She was scared and felt helpless.  Two of the many emotions that rattled my brain just 9 months ago.  I remembered how lost I felt the day after my infamous appointment in October 2010, when reality hit hard.  So I did what my husband, mother and father did for me, and I was all ears and a tissue dispenser.  We talked through her fears, her options, her anxiety and helplessness.  We bounced emotions off each other life a tennis ball on the court.  And, I gave her the name and number of my wonderful doctor.

To say today was just another normal day, would be deceiving.  Instead, it was an emotional day where a bond was formed between two people who are many years apart in age, but very close together spirit.  I have met some truly amazing people working as a nurse, and I hope I never lose that touch "relating to my patients".

Mini Milestones

“Direction is more important than speed. We are so busy looking at our speedometers that we forget the milestone.” 

- Unknown

This past April and our current month of June, have significance that propel me into each day and encourage me to keep on fighting. A year ago in April of 2010, I received a call from my Doctor while I was at work.  At the time I was finishing up a close to 14 hr shift at the hospital.  When my cell phone rang, I stepped out of my patients room and answered.  It was then that I was told I needed to be admitted to the hospital, asap.  From my previous visit and lab work results, the beast was in full throttle and I again felt defeated.  In the past, I had always "known" it was about time...I felt bad enough to even suggest an admission.  This was different, I was not feeling bad, just a little more tired than usual but I attributed it to the extremely long hours at the hospital.  After a quick pity-party in the hallway of solitude, I gathered up my tears and emotions off the floor and put myself back together.  I'll never forgot those last couple of hours, where I had to focus on my patients, their pain, their discomfort ... all the while, trying to hide my own disappointment and fear, knowing that in just a few hours I would be in their shoes.  After finishing my shift, I drove home, gathered my "hospital bag", gave my kisses to my pups and my husband piled me in the car and took me to the hospital.  In a matter of a couple hours, I went from being a caretaker to becoming one of the "wounded" in the stale hospital bed. 

April was my last "tune-up", where I spent about a week in the hospital, and another two weeks confined at home with a PICC line.  Unfortunately this "tune-up" didn't go quite as smoothly as the others.  After a couple failed attempts at inserting the PICC line, "third times a charm" kicked in and they finally got a good vein.  I was sent home and soon developed severe pain which ultimately landed me in the ER.  This pain was the most excruciating pain I had ever felt, and I knew something wasn't right.  A couple hours and doses of morphine later, they determined I had a blood clot from the first PICC line (I had to ask the Dr to remove the initial PICC and place another one b/c I felt such discomfort.  So they removed that PICC against their wishes, which I later learned had caused the blood clot, and inserted a new one on the other arm).  I completed about 2 months of anti-coagulation therapy, where I gave myself shots in the stomach, took oral pills and had numerous ultrasounds to observe the size of the clot.  Over a year later, I still have sensations and visual residual from the clot.  Point being, trust your body and be your own advocate.  I had to basically beg the Dr who inserted the PICC line, to take it out.  I'll never forget when he said "we usually don't remove these just because they are painful".  I wasn't having any of that, and stated "remove the PICC line, please".  There is no telling what would have happened if I had listened to them and left the first PICC line in.

So, April was full of visits to the doctor and finally May came around and I started feeling better.  All was well, until the weekend of June 5-6th 2010.  We were in Ohio for a friends wedding and I started feeling crummy at the wedding.  We left early from the reception and headed back to our room to get some rest.  I woke up at 3am the next morning with extremely high fevers, horrible shortness of breath and breathtaking pain in my lungs.  I watched Bob sleep until I couldn't take it any more and woke him up.  We loaded the car early and I paged my doctor on the way home.  She immediately got me admitted to the hospital, and just 2 short months later I was back to being a patient.  Fortunately, I did not have to have long term therapy and they determined I had come down with a bad virus.  The first couple of days in the hospital are blurry to me, as I was in so much discomfort and on pain meds.  Bob had to travel that week I was in the hospital and my parents were out of the country.  This  was probably a blessing in disguise, because I was in such pain that I'm afraid it would have scared them to see me like that.  Icing on the cake, was when I met the "lung transplant specialist" and his entire team.  It all became very real to me, when sitting face to face with the people who might in the future help me have a second chance at life.  Discussing the possibility of having a lung transplant, when I was feeling extremely ill, made for a very emotional stay in the hospital.  

So, last year at this time I had been in and out of the hospital twice, taken a trip to the ER, developed a blood clot, battled a severe virus that took me by surprise and discussed the very real possibility of having a lung transplant.  I can't help but remember those days and on one hand feel extremely scared at how fragile this situation really is, but the other hand I am grateful that it has been a year and I am feeling relatively well. Sure, some days are good while others are more difficult.  But, I had a different mentality a year ago.  I felt invisible to this disease, like it wasn't really there or it would go away.  Since then, I have had to come to terms with my health, my lungs.  I have made a much greater effort at controlling those things that I can to help keep my health in top condition.  

Living with a chronic illness can be challenging, frustrating, debilitating and depressing.  It can also be life changing, liberating and powerful.  One can choose to take their most challenging situations and struggle, or become stronger from them.  I encourage you all in whatever challenges life throws your way, to learn from them and grow stronger because of them.  Big or small, life's hurdles and how we jump over them, make us who we are.  How high can you jump??